It Is All About the Level System

With order and security in his life again, Ben has done very well today. He earned Level 3 on each meal, and chose to eat mac-n-cheese today. The dietician would like to see Ben go home with more veggies than carrots and peas, and so tomorrow Ben will have a choice of cucumbers, and cauliflower. On Thursday, he will have a choice of cauliflower and green beans. I'm so good with that!

It's All Fun and Games Until...

your best friend goes home. The clinic also chose to remove Ben's level system today to see if he really needed that much motivation and structure. That change rocked his little world, and he fell apart in breakfast and lunch. He had some mighty fine behavior, including throwing food, spitting food, intentional vomitting, and even threatening to wet his pants. It was a very special day. They most definately got some interesting data from Mr. Ben, and the level system went back into effect for dinner.

Chocolate Milk and Miracles

Yesterday I flew solo all day. I made all of Ben's meals according to the menu they gave me, and followed protocol. The meals went smoothly, and Ben did a great job. I did change his whole milk when my good friend left behind some organic chocolate milk. Ben was very interested in drinking it, and I figured that was a good thing.

There is an older couple staying where we stay, and we have gotten to know them, and love them. We eat a lot of our meals with them and their son. The man used to be a wrestling coach, and is a tough, but kind guy. They asked if Ben had any nicknames, and I admitted that he did not. They liked the fact that he was trying chocolate milk, and proceeded to call him "Chocolate Milk" the rest of the day. Ben seemed pleased with that. I was pleased that he drank a new flavor.

We are so thankful to be here. The fact that we are is a miracle. I have had contact with others who have been on the waiting list for about a year, and have not heard from the clinic. Ben was evaluated here on October 29th. He began the program on March 1st. He was in the door in four months, and will be out by six months. I am so grateful for those who have prayed faithfully for us to be here, and for things to go smoothly for us. I am also amazed that we were able to choose a new insurance company that works so well with this facility, and that approval happened so quickly. Wow!

One other miracle is that we were here when our new friends were. They live in Kentucky, and are an hour from the place we will be moving in one year. She and I hit it off, and I am definately missing her friendship, as they graduated on Saturday. We went on all kinds of adventures here, and had fun exploring and planning our days together. Just like the moms formed a quick bond, Ben found a special friend in her son. They have been inseparable for seven weeks. The clinic even did a co-treat with the boys, for the first time ever in the clinic's history. Ben and his buddy ate together while my friend and I used their individual protocols to feed them. I look forward to being able to see her soon. Her son was evalutaed in mid-August, and I do not believe that it was chance that put us together for these seven weeks. Yes, miracles still happen!

Today we went into the clinic for a "makeup" day. Ben's most recently mastered food is pizza, and he was introduced to rice in his last meal this afternoon. Tomorrow he will eat rice in all of his meals, and I will introduce a new fruit at dinner. He should get to choose from three fruits, but I only have a banana right now. I am hoping that the breakfast that gets donated in the morning will include some fresh fruit. The clinic was short on that today since it is Saturday. All told, Ben has mastered 16 new foods during this admission, and he will add more next week. He is also a fan of Five Guys french fries, which we were enjoying outside last night until it began to rain on us. I am thrilled by the variety of foods he will eat.

I haven't posted about the traffic or pedestrians in a few posts, so I'll tell you my fave of the day. In two separate incidents, I witnessed a pedestrian pass up his opportunity to walk when the white walk signal was on. They, instead, chose to wait until the red hand was solid, and traffic was trying to go. While the cars were attempting to accelerate, the men stepped out into oncoming traffic and appeared irritated at our efforts to move forward. Color blind? Signal blind? I cannot explain such ludicrous behavior.

A special note of thanks to Ben's preschool teachers and classmates who sent Ben adorable notes. He loved reading them, and it meant a lot to him. He also got a card from his sweet bus aide. We love the staff on bus 56!

Puree-Be-Gone!

My dad will sometimes tease me and say that I am "slow, but accurate." This morning it dawned on me that my pureeing days are OVER! I cannot believe it! Ben has taken off in his eating. The behavioral psych told me it would happen, and I tried my best to trust her, and she was spot on. I never dreamed this day would come. This is nothing short of a miracle.

What a Difference a Change Makes

Yesterday, Ben had a couple of rough meals. We were struggling with bite size. I was trying to judge the size that was acceptable, and Ben could not tell what was expected of him, so he was nibbling. In breakfast, when he realized that he was going to be a level 2, he went for broke. It was one of those moments when I wished that I could pull a Spiderman, and take a photo from the ceiling of the feeding room. His nibbles on his pancakes were ridiculously slow, so between the nibbles (which do not count as a bite), and taking nibbles too slowly, he was demoted. Upon demotion, he began hitting, screaming, spitting pancakes, then throwing pancakes, he threw his plate, launching the spaghetti noodles, and for the grand finale, the cup of milk hit the wall, popping the lid, and milk splashed down the wall, and spread across the floor. There was breakfast carnage everywhere. I wanted to lay on the floor and laugh till it hurt, but that would break protocol, so I forced myself to behave. Lunch went the same, except he somehow managed to earn level 3.

Two disastrous meals caused the feeding therapists and the behavioral psychologist to huddle for a brainstorming session. Their solution was simple. All of his food would be cut into the appropriate size bites. I loved it! Ben loved it too. At dinner, he zipped through his sandwich in no time, and his snack in the evening was no challenge at all. Today his meals have been picture perfect, and a complete turn around from the snapshot of the previous day's meals. Miraculous!

The clinic is going to start aggressively introducing new foods. They asked me for a list of foods that I would like him to eat. My ideas: chicken, grilled cheese sandwich, hamburger patty, green beans, cauliflower, baked potato, and sweet potato. They will use one day per food, assuming he does well with the plan. He will be expected to take two bites in ones meal, five in the next, and ten in the last. That food will then become part of his regular meal rotation. The irony of this treatment is that he will be a better eater, by far, than his adorable and picky twin brother.

All the New Foods

I thought I would give a quick listing of Ben's foods that he has added since being here: steamed carrots, steamed peas, hard boiled egg whites, diced apple, orange sections, chocolate pudding, applesauce, peanut butter and jelly sandwiches, and the latest... spaghetti in marinara sauce. We have two weeks left, and I am dreaming of the possibilities. I am so thankful to be here, and thankful for all of those helping to make this possible for our family.

Stressed by a Peanut Butter Sandwich

As I said, I am doing the feeding now. I am happy to be the "boss," as Ben calls it, but it is much more difficult than I thought. When I feed him, there are two data takers in the room tapping away on their computers, evaluating every move that Ben and I take. This afternoon, the stress of being dissected at each moment was almost too much. I know they have to be in there, and I know their data is important, but I am struggling with being in the hotseat, and thinking on my feet is a substantial shortcoming for me.

The food that is throwing me off is the PB sandwich. I have to judge each bite's size, and decide if it is big enough to count as the size of a green pea. If it is a big enough bite, I praise him, and we move on. If the bite is more of a nibble, then I ignore it, and do not reset the timer until he takes an appropriate size bite, or the time allowed per bite is up. It all boils down to a judgment call, and you do not have time to second guess yourself. The thing that makes this burdensome for me is the two data takers sitting there evaluating my actions. I am trying to block them out. I thought their poker faces were hysterical until I found myself under their magnifying glass.

Being a self-proclaimed foodie, I have to mention the delectable dinner that was brought in tonight. A yummy salad, crab chowder, crabcakes, grilled chicken (which was so moist), ribeye steak, grilled fresh veggies, and a vast array of dreamy desserts. I had to take a picture of my plate so that I could savor the memories. Sadly, I was too beaten down by the sandwich stress to work out today, and was completely lacking in enough self control to resist the creamy chowder and dessert. I glutted shamelessly.

I may not love the freakish pedestrians, and am stupified by the city drivers, but the generosity of the community is remarkable. Many people here are the epitome of charity.

Protocol or Parenting?

Ben has been doing a "miralax" session in the clinic ever since I mentioned that he was taking 40-60 minutes to drink his water with miralax every morning. It was a stressful situation for me, as he needed to get it done before we went to the hospital each day. We usually do the sessions at 2:00pm, and he usually gulps it down in twenty seconds, leaving me to wonder why he would not do that for me. When we do the miralax session, there isn't really protocol other than completing it within 15 minutes, and there is no punishment for not completing it.

Today, Ben was very upset that his best buddy's dad is in town. His friend and his parents went out to lunch, and I wanted to take Ben for a walk outside to get fresh air during my lunch. Ben could not understand why he could not see his friend and play with him. He whined and complained for our entire 30 minute walk, and when we went upstairs to do our miralax session, he ramped it up. He refused to go to the bathroom, he hit, kicked, screamed, and had to be dragged into the feeding room as he performed the limp body manuever that kids seem to be so good at. When the therapist put him into the feeding chair, he tried to kick her, and then pushed against the high chair tray making it difficult to attach. He was really on one. I presented the miralax (a flavorless, textureless substance mixed with about 3 oz. of water), and he sipped slowly, but still finished within two minutes. When he was done, he looked at me and snarled. I then asked him to use his words. He then screamed "get me out of here now!" I calmly told him that I would be happy to take him out when he asked me in a nice manner, and I looked away from him and waited for him to calm down. His therapist shot me a little look, but said nothing. Ben eventually calmed down, and I took him out, and we were on our way.

Before dinner, which I would be feeding to him, his therapist asked to talk to me. I knew I had done it. She then explained that I had done the wrong thing, and that the clinic's protocol is to ignore bad behavior, and to not give kids the reaction they are seeking. Okay, I got that. However, I feel that if I just ignore his nastiness, he will think it is okay to be nasty. I refuse to have my kids treat me that way. Some things are ignorable, like when he threw his green peas on the floor, or when he throws up or spits food out, but disrespect is not working for me, especially in a session that they claim does not really have a true protocol. I feel like she crossed the line from protocol to parenting, and I was not happy about it.

Some Like It Hot

...and some really don't. It was a record temperature here today, and it was hot. Yep! Even hotter than Phoenix. I packed clothing for winter, so I am scraping by with my two pairs of shorts, and four short sleeve shirts. I did bring my work out clothes, and I ran on the treadmill in a room that was just as hot or hotter than outside. It was misery. I am looking forward to a cooler weekend, even if that means rain.

Ben did well today, except for his carrots. In his dinner meal, (yogurt, applesauce, pb sandwich, and carrots) he saved the steamed carrot slices for last. He was really gagging those down. When he spits up/throws up, the therapist doesn't hesitate, and places another bite of carrot in his mouth, then wipes up the mess. I think he thought he was getting away with the gagging-spitting thing, because he started doing it on every bite, and was working through the carrots quickly that way, and his therapist just wiped up what he gagged up. Suddenly, his therapist got up and quietly left the room. When she returned, she had a bowl of carrots. Ben just stared at the bowl with big eyes. She nipped that behavior immediately. He ate his last few carrots perfectly.

I'm Going In!

Ben is doing remarkably well. He is making incredible gains here, and he is having a blast. When he is not eating, he is often in the playroom. He has made it his duty to cheer up any sad kids, and is getting quite the reputation for being social, energetic, and fun. He has even got a secret admirer in a little girl who has crush on him. The lady at the hospital who sells stamps loves to see him running down the hall, and swears that she is going to bottle his energy and sell it. That's Mr. Ben.

In his meals, his plate is looking more and more typical. For dinner this afternoon, he was served peas, applesauce (a new food for him, see post from 10/29/2009), yogurt, and 1/3 peanut butter and jelly sandwich. They are keeping some purees in his meal so that he does not get too tired from all of the chewing. The clinic also serves him a totally different combination of foods at each meal, as they have noticed he likes things to be the same, and it rocks his world when they are different. He needs to adjust to constant change.

Tomorrow, I will be worked into his meals. I will do a role play with his therapist to practice, and then will start sitting in the room with the data takers, and then will eventually feed him. They want to watch me feed him to see if any problem behaviors come up for me. They said parents have a way of bringing that out in their kids...imagine that. They will also train me to introduce new foods to him so that he understands that I will definately be doing that, and he will definately be learning to eat that food. They said I will introduce atleast two while I am here. That is my biggest concern, and I am so happy that they will be addressing that. They will also help me come up with a plan for school lunches and snacks next year. Hooray for all day kindergarten!

Top 3 Traffic Maneuvers

I've only briefly mentioned the driving here, but it is a daily challenge that I have to face. It takes all of the courage and patience that I can muster to deal sanely with the insanity. So, I've done a bit of driving around today, and I've collected my top 3 favorite traffic conundrums, in no particular order.
1.) A lady in front of me comes to a full and complete stop at a green light, as if it is red, and continues to sit there for the duration of the green and the red light. She completely disregarded my Sentra's little bleating horn.
2.) A pedestrian runs directly in front of me as I am driving about 35 mph. I slam my brakes, and he continues across the lane to my right, causing a similar reaction from the car next to me. The pedestrian continues on as if the onslaught of screeching cars never existed at all.
3.) A man on his bike rides toward me head on in the center of my lane, as I am driving toward him. A very lopsided game of chicken? Insanity? No, just another normal day on the streets here.

I am enjoying my journey with Ben much more than my journeys on the road. Today he ate chocolate pudding. He loved it the first time he tried it, but at dinner, he made some crazy faces as he choked it down. It is replacing the pureed peaches in his regular meals. When he is comfortable with the pudding, it will be replaced by another puree that I can conveniently purchase, like applesauce, hummus, or refried beans. They are trying to decrease my workload, and I am thrilled with that thought. I will not shed a tear when I no longer have to make baby food.

Today Ben's carrots were removed form his meal, and he was given 20 green peas to eat. He did very well with them. He only eats one at a time, but the fact that he will willingly eat something green is fabulous. He was also presented with three choices at dinner: pancakes with syrup, pieces of bread with peanut butter, and diced boiled egg. I was surprised that he chose the two pieces of bread. I thought he would choose the pancakes, but then I saw that they were purple, as they are blueberry, and then I realized that was too foreign to him. They have also noticed that he will go for something familiar to him, even if he does not like it yet. He has been working on peanut butter in OT. So for dinner, he ate yogurt, pudding, 20 peas, raisins, diced apples, and two small pieces of bread. Not bad.

I ate lunch at a garden area near the building we go to. It was an absolutely gorgeous day. I soaked up the rays of sunshine and basked in its warmth. It made me miss my Arizona sunshine. On the way there, my friend offered Ben a blueberry. When he saw his good buddy eat one (a first for his friend, too), Ben grabbed one, and put the whole berry in his mouth. That was amazing! The fact that he put a wet food into his mouth, and that he put the whole berry into his mouth is wonderful. He topped it all off by eating one more blueberry. This clinic is a miracle.